Acyclovir

I've seen the topic of acyclovir come up in several other threads but I haven't seen it as the topic of its own thread. I have been on acyclovir for nearly six weeks so my experience is limited. I was hoping to create a space where those using (or who used to use) acyclovir could share experiences and those interested could ask questions.

To get things started, I guess my first questions would be:

Have you used acyclovir?

For How long?

Did you start right out at a target dose or did you gradually increase your dosage?

Why did you start on Acyclovir?

What symptoms led you to acyclovir?

Were there lab results that led you to acyclovir?

Were there side effects that have caused you to lower your dose or to stop using acyclovir?

Has acyclovir made any difference in your health status (for better or worse)?

Anything else anyone cares to add.

Thanks,

Shane

PS. I wanted to get this up but I'll be happy to start in with another post or I can just join in if the conversation gets started before I have that chance.

Im interested in acyclovir as its cheaper then famvir and valtrex. Im on famvir and started at the threapuetic dose. I didnt notice anything straight away, took 2 months and realised i hadnt crashed. I think u need atleast 3 months on av's before u notice anything.

Did you start right out at a target dose or did you gradually increase your dosage?

Started at the dose of 200 mg 5 times per day. Total 1,000 mg per day.

Why did you start on Acyclovir?

My doctor is hoping it will help increase my glutathione levels as it seems to have done in others.

What were your symptoms?

All over the map. I do have high viral activity - the usual EBV, HHV6, esp. CMV. I have not rechecked these numbers after 7 months of Valcyte so they most likely have changed some.

If you're asking what symptoms I had from Acyclovir, I can't say I noticed any for good or ill.

Were there lab results that led you to Acyclovir?

No specific test related to Acyclovir, but Vitamin Diagnostics Methylation Pathway test shows that I have a methylation cycle block with depleted glutathione, and hoping this will help to raise my glutathione levels. (Rich Van Konynenburg is the expert on methylation cycle block, although I don't know what he thinks of Acyclovir for the purposes of raising glutathione.)

Were there side effects that have caused you to lower your dose or to stop using Acyclovir?

I stopped after three weeks because of overwhelm due to adding on an antibiotic protocol for gut pathogens (plus the beginnings of the Simplified Yasko per Rich Van K). It's not a good idea to try so many things at once (I know, I know), although I waited a week before starting each thing. Still . . . I didn't intend to quit, but everything fell apart.

I started Acylclovir again today at the original dose. It's difficult for me to remember to take something five times a day due to cognitive issues.

I will let you know how it goes. This time I don't plan on adding in anything else.

Did you start right out at a target dose or did you gradually increase your dosage?

I am very gradually increasing my dose. My 'target dose' is 800 mg twice a day (BID). I started on 100 mg once a day and was instructed to double that every 2 weeks. I erroneously doubled the dose each week the first three weeks. I am now doubling the dose every two weeks. My present dose is 400 mg twice a day

Why did you start on Acyclovir?

My Doc tested for a number of infections and I was positive for active/chronic HSV-1, EBV and enteroviruses. I have a history of numerous cold sores and lots of symptoms associated with trigeminal nerve inflammation. I have also had significant daily - nearly constant - "atypical complex headaches."

I was not prescribed valcyte because I was not positive (either current or past infection) for CMV or HHV-6.

Like Gracenote, I had was taking an antibiotic for gut issues - xifaxin (I have had repeated bouts of Small Intestinal Bacterial Infection - SIBO - as an aside, the xifaxin has done wonders for my gut, it also lead to a completely negative hydrogen breath test and nearly complete relief of severe abdominal pain - my gastroenterologist is pretty sure that the SIBO is caused by significantly reduced motility caused by autonomic neural issues) . I waited to start the acyclovir until after having completed the two week course of antibiotics.

Were there side effects that have caused you to lower your dose or to stop using acyclovir?

No. The first three times I began or increased my dose I had periods of several hours of dizziness/disorientation for 1-4 hours within 30 minutes of each dose. These ceased within 3-4 days of each dose change. I have no side effects at present that I associate with the acyclovir.

Has acyclovir made any difference in your health status (for better or worse)?
So far, nothing dramatic. I am keeping a very detailed diary of all symptoms. My background is in social science and assessment so I have been creating/fine tuning my own diary & symptom checklist.

Other Issues:

My docs feel that the HSV-1 infection along with EBV and enteroviruses are probably to blame for my neural issues and cardiovascular instability. I may be starting oxymatrine in February (pending a positive stomach biopsy). I also have a complex history of toxoplasmosis and an enlarging posterior pituitary lesion (most likely a cyst - infection? Don't know yet).

Did you start right out at a target dose or did you gradually increase your dosage?

Went straight in on 400mg twice a day. (which I had taken before CFS without problem)

Why did you start on Acyclovir?

Not long after ME/CFS onset my regular but infrequent and minor herpes outbreaks (which I didn't bother to medicate) became much worse and more or less continuous.

What symptoms led you to acyclovir?

see above

Were there lab results that led you to acyclovir?

No. I can only envy North Americans the amount of lab work they get done.In NZ/UK my experience is you have to push hard to get tested for anything except the real basics. And even if you convince the GP to do them they can be blocked higher up the food chain (eg Lyme)

Were there side effects that have caused you to lower your dose or to stop using acyclovir?

No, none.

Has acyclovir made any difference in your health status (for better or worse)?

No. I figure suppressing the sores and malaise and nerve pain of a bad herpes outbreak is enough of a benefit, given I tolerate this well.

Did you start right out at a target dose or did you gradually increase your dosage?

Started at 200 mg daily then went to 4000 mg daily.

Why did you start on Acyclovir?

1. Electronmicroscopic inspection of my CSF found "viruses of the Herpesviridae family".

2. Constant pain and pressure in my left lobus temporalis together with the fact that HSV is typically found in the lobi temporali or lobus frontalis.

What symptoms led you to acyclovir?

See above.

Were there lab results that led you to acyclovir?

See above.

Were there side effects that have caused you to lower your dose or to stop using acyclovir?

No.

Has acyclovir made any difference in your health status (for better or worse)?

No.

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Hi Alesh,

Thanks for posting. I have not had that degree of detailed analysis of my CFS but I definitively have pain and pressure in the temporal regions as well as tinnitus and pain/pressure deep in my ears. If I recall correctly, I read in another post of yours that symptomatically you felt your "illness is a kind of viral encephalitis."

I would say that my experience has been the same with documented mid-brain damage. As I mentioned I have what is presumed to be a pituitary cyst. I also have diabetes insipidus (which only occurs when a large majority of the requisite cells in the hypothalamus are no longer functionin?g or the vasopressin (ADH) in prevented from reaching the pituitary by mass effect). Additionally, I have a number of endocrine issues, including secondary adrenal insufficiency (nearly no response at all to challenge test).

it's really interesting since I also have tinnitus. I started to feel tinnitus somewhere in the left side of my head about 6 months after the onset of my illness and at the same side of my head I feel constant pain and pressure. My tinnitus is like a "hissing noise" and in the past it was quite distracting: I had to use headphones and mask it by listening to some music. It is also interesting that an MRI scan of my brain revealed some subarachnoidal cyst, but I was told it is diagnostically unimportant.

The visual inspection of CSF by scanning electron microscope isn't much specific or effective. If I remember well it can reveal reliably only few neurotropic viruses. But it can be of significant value in establishing novel pathogens. And I wonder if in fact behind the vague statement "viruses of Herpesviridae family" is something like XMRV.

I stopped to take acyclovir since it had no effect but perhaps it was premature.

* Have you used acyclovir? yep
* For How long? 1 day
* Did you start right out at a target dose or did you gradually increase your dosage? start at 3 x 400mg a day
* Why did you start on Acyclovir? Trial and error
* What symptoms led you to acyclovir? cognitive, neuro, tired, the usual
* Were there lab results that led you to acyclovir? nope
* Were there side effects that have caused you to lower your dose or to stop using acyclovir? not yet
* Has acyclovir made any difference in your health status (for better or worse)? I have the feeling that my head is slightly more clear, but this is probably the placebo kicking in

...subarachnoidal cyst, but I was told it is diagnostically unimportant.

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This should read - I can see it but I don't know what it means or what to do about it and so let's agree to not think about it (at least until something related to it decides to "fall off" or stop working).​

Leaves & Gracenote, Welcome to this discussion and good luck.

OverTheHills,

No. I figure suppressing the sores and malaise and nerve pain of a bad herpes outbreak is enough of a benefit, given I tolerate this well.

I thought I'd share a few thoughts with you on my experience with low initial doses of acyclovir.

It is my understanding that the tablets are only available as 400 mg and 800 mg tabs. My doc wanted me to start on 100 mg a day, doubling my dose every two weeks. He prescribed the 400 mg tabs, requiring me to break them into 4ths for the two weeks (1/4 tablet once a day) and then haves for the next four weeks (1/2 tablet once a day followed by 1/2 tablet twice a day). After six week, I would be taking a whole 400 mg tablet twice a day. Sounded like a bit of a pain but I could deal with that.

Off I go to my pharmacy and ask to fill the Rx. He hands me eight 400 mg tablets and says there is a national (US) shortage of acyclovir 400 mg tablets and said that he would be happy to give me the balance in 800 mg tablets. These things are not scored, do not break evenly and the thought of breaking them into eighths was more than enough to induce another crash.

After a few days of breaking my eight 400 mgs into 4ths my pharmacists called. Acyclovir comes in a liquid!

A different pharmacist just laughed at the idea of having to gradually increase dose saying "acyclovir doesn't cause side effects in anyone!" Guess which one I work with?

The oral suspension that I was given contains 200 mg of acyclovir in 5 ml (1 tsp).

Problem solved. I get a liquid medicine measuring/administration spoon (deep tube with lots of markings for dosage - used with kids all the time).

Weeks one and two - 2.5 ml (0.5 tsp= 100 mg acyclovir) once a day
Weeks three and four - 2.5 ml (0.5 tsp= 100 mg acyclovir) twice a day
Weeks five and six - 5.0 ml (1.0 tsp= 200 mg acyclovir) twice a day
Weeks six and seven - 10.0 ml (2.0 tsp= 400 mg acyclovir) twice a day
Weeks seven and beyond - 20.0 ml (4.0 tsp= 400 mg acyclovir) twice a day

Because of the low doses in the first several weeks I have more liquid acyclovir from a one month supply than needed to taper all the way to my target dose of 1600 mg a day over seven weeks. I'll use the liquid I have until it is gone and then switch to the tablets as they are much easier to take with me when I'm out (say visiting relatives for the holidays).

My point is that starting with really low doses can be hard (and inaccurate) with the tablets. The liquid has made it so much easier. No need to refrigerate but definitely make sure to shake well.

Hope this helps for those of you who are sensitive to everything they introduce into their bodies.

It is my understanding that the tablets are only available as 400 mg and 800 mg tabs.

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I'm a little confused about the dosages and times / day different ones of us are on. And now to hear that tablets come only in 400 and 800 mg.

I am taking 200 mg capsules. And I am taking one 5 times a day. Anyone know the difference between tablets and capsules? Any one understand why the different dosage schedules?

No real side effects so far — I started with 1,000 mg per day — I'm not overly sensitive to some meds (antibiotics are different).

Day One: I got a headache that lasted for quite a while, the kind I get when my liver is struggling.
Day Two: My pain level increased quite a bit. I'm thinking it had more to do with the weather, though.​

Hi guys! This is the perfect day for me to post my results as I am crashing (yuck!) from a new dr. appt 2 days ago and I can demonstrate how much acyclovir has helped me UNTIL I experience PEM! For example...I couldn't figure out how to fill out this questionnaire in a normal easy way! I can't remember how to cut/paste etc, show italics, change typeface, color etc.

I just now had to type a few words in each of the questions - I could only hold 2 or 3 words in my brain at a time...so, I had to continually scroll back down to Leaves post and copy her q's! up and down - up and down! A week ago (a good week) I probably could have memorized EVERY question on the "poll" without having to refer back (and also how to cut/paste etc.!!) -what a difference a day (or a week) makes!
I actually answered the questions in GREAT detail yesterday (even MORE long winded post than today!) and yet I lost the whole thing because I forget to plug in my laptop...THAT was the beginning of my crash (always about 24-48 after the "offending" activity...like clock work! amazing!) Anyway,I thought this was a classic example.

So here goes (my not very "abridged" version!LOL!):

1.Have you used acyclovir? yes

2.For how long? approx. 3.5 years

3.Did you start right out at a target dose or did you gradually increase your dosage?

Have been under care of Neuro for years (dx Trigeminal Neuralgia, Migraines/optical Migraines/C-Fiber Neuropathy, Asymmetrical Myelopathy, finally also dx ME/CFS) Also abnormal clinical/lab findings: Positive Babinski, Hoffmans, Hyper-reflexia, Tinnitus, Basal Ganglia/Corroidal Fissue lesions - Brain MRI).
He knew Dr. Chia and his work with Enteroviruses/CFS, knew his protocol and started me on Acyclovir pending appt w/Chia. Oh, I was bedridden at that time.

NOTE:I feel MUCH WORSE when I don't take Acyclovir! Have tried to titrate down by 1 dose (800mg,) but have rapid exacerbation of all symptoms including dramatic reactivation of Shingles.
I can probably continue for 1-2 more years w/Acyclovir BUT must begin to lower dosage (by 800mg.) and ADD Equilibrant (very slowly: 1/2 cap. only for 3 months to start - IF NO reactivation of shingles after 3 mos. can up to 1 cap)

8.Has acyclovir made any difference in your health status (for better or worse)?

Yes. Quicker recovery time w/PEM. UNLESS I over-do, a noticeable improvement in Cog/Memory probs (can read, now!). Slight improv. in pain. No improv. in Fatigue, flu-y feeling. I'm housebound (ONLY leave for dr. appts.) - but can get out of bed, now!

*I have a question (I will post here, as it might not be off-topic (if it is, I'll move it!): I know that Acyclovir is SUPPRESSING viruses (and it it obviously suppressing Shingles).

I no longer catch colds/flu's - EVER!

I know CFS is considered to be a NEURO-immune disease...but is it also an AUTO-immune disease?

My new doc said that since my Shingles appear on BOTH sides of my neck at once, that only happens w/AUTO-immune Disease. Do "we" have both? What is an Auto-immune Disease?

2 days ago I had a blood draw (unusually UNpainful! GOOD!)...but within 8 hours, the site of the "stick" - inside r. elbow - had become infected! Tiny open sore, inflamed, angry, red, about dime-sized, tiny discharge, no fever though, no red streaks...but painful.
Immediately treated w/Bacitracin. Today the area of redness is receding a bit, still a tiny open sore - but not gone yet. (Tech was good, no bruising as I often get, wore gloves etc.)

I've NEVER had this type of reaction before. Any quesses as to what this might mean? Any connection to AV use? I do bruise VERY easily now (BIG, dark bruises - sometimes I can't even identify the causes).

From what I have read and heard, different schedules/dosages are recommended based upon anticipated sensitivity to side effects (my doc was very worried about a bad reaction and wanted an initial dose lower than is possible with the 200 mg capsules) and other health issues. I've seen some schedules that spread the daily amount out into 5 or more smaller doses over the course of the day. These schedules appear to be used when the doc is concerned about renal issues (see page nine on renal impairment - http://us.gsk.com/products/assets/us_zovirax.pdf).

Jackie!, I'm glad you're back amongst the living (at least as far as that goes for us). So sorry you last you're first version. I'm going to dig into your post in a bit (and appreciate it that much more, knowing what it took). Thanks for adding your experiences.

If you're not having any luck with acyclovir, make the switch to valacyclovir, and see if that helps before giving up. It's only FDA approved for HSV (types 1 & 2) and chicken pox/shingles. Anything else is just experimental. All CFIDS treatment is trial and error.

Edited to add: Apparently Valtrex's patent expired this month. There is now a generic valacyclovir available. Much cheaper. Good luck!

Hi Faith.Hope.Love! This is a great reminder for those that are ready to give up!

My initial understanding was that once inside your body the Valtrex becomes Acyclovir (it also "leaves" more quickly...this is a "simplistic" explanation, I know! )

My Dr. wanted me to spread the dosages out throughout the day (800mg. 4xday).

Having never been given Valtrex...I don't know the difference in efficacy.

My dr. did mention that one difference between the once a day Valtrex vs. the 4-5x day Acyclovir, is that folks might have difficulty in remembering not to miss any doses (especially if you're dosing 5x day!)

As wonky as I am...I only missed maybe 2 doses...although I DID make a boo-boo and take one EXTRA (add'l 800mg) one time....and that shook me (unecessarily) up! I have a sort of goofy system of pill-keepers and time-tables etc. - but they usually work for me!

As for the cost...it is most definitely a consideration, in my case. I will be taking an AV for my entire lifetime, according to my Neuro., and Valtrex is NOT covered - but Acyclovir is.

It's such a shame....there are many fine experimental treatments to be tried (such as IVIG, Interferons, etc.) but with an HMO these are cost-prohibitive for me ($5,000.00 per month for IVIG!).

I remind myself how lucky I am that I have any treatment AT ALL...when so many here have nothing! I have a "wish-list" of tests/meds I'd like to have access to some day.

The other day I found out that I can actually get a T3, T4, anti-TPO test (rather than just a TSH)...for the first time! (and yet I HAVE Hypothyroidism/thyroid Lesions) I'm thrilled at this news!

BTW..my Neuro said "just take them (the pills) all at once...that way you won't forget. No problem." My I.D. Doc said "No way!" 3200 mg. all at once??? NOT!

Within 1 month of STARTING Acyclovir I developed Shingles (source: a Lymph Gland and nerve pathway in my neck).

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I know we've talked about oxymatrine and entroviruses in the past and that we're on similar paths in that regard. Forgive me but right now I cannot remember of we have talked about xifaxin.

For years I was repeatedly diagnosed with SIBO (recurrent and chronic). Just this past October I was treated very successfully (but possibly only temporarily) for SIBO (often associated with IBS or misdiagnosed as IBS) with a 15 day course of xifaxin. No gut pain in two months! And I am actually having to adjust to a gut that is very close to normal. It's been years! My gatroenterologist thinks the most likely cause of my SIBO is autonomic neural damage and a resultant lack of motility. Killing off all the bad bacteria (and taking lots of probiotics) stops the infection but it will probably come back until the neural damage (which may be associated with viral infection - including enteroviral infection and thus the oxymatrine) is addressed.

I'm actually trying to delay my stomach biopsy until after the new year (but before my next appt. with Dr. M.) so I can pay for it with pre-tax dollars from our 2010 cafeteria account. Gotta know how to play the game!

8.Has acyclovir made any difference in your health status (for better or worse)?

Yes. Quicker recovery time w/PEM. UNLESS I over-do, a noticeable improvement in Cog/Memory probs (can read, now!). Slight improv. in pain. No improv. in Fatigue, flu-y feeling. I'm housebound (ONLY leave for dr. appts.) - but can get out of bed, now!

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Has anyone else had itchiness associated with acyclovir? I know it is a listed side effect but it's not severe and I have had histamine/allergy issues in the last 18 months.

*I have a question (I will post here, as it might not be off-topic (if it is, I'll move it!): I know that Acyclovir is SUPPRESSING viruses (and it it obviously suppressing Shingles).

I know CFS is considered to be a NEURO-immune disease...but is it also an AUTO-immune disease?

My new doc said that since my Shingles appear on BOTH sides of my neck at once, that only happens w/AUTO-immune Disease. Do "we" have both? What is an Auto-immune Disease?

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Again, very sorry about the shingles (my VZV levels are high and I'm keeping my fingers crossed).

My understanding (aided by Wikipedia):Neuro-immune - the immune system and those components of the nervous system that modulate immune response. In practice, the neuroimmune system also includes hormonal signals and cytokines that participate in signalling between the immune and nervous systems.

Auto-immune Disease - Autoimmune diseases arise from an overactive immune response of the body against substances and tissues normally present in the body. In other words, the body actually attacks its own cells.

Immunodeficiency - Immunodeficiency (or immune deficiency) is a state in which the immune system's ability to fight infectious disease is compromised or entirely absent. Most cases of immunodeficiency are acquired ("secondary") but some people are born with defects in the immune system, or primary immunodeficiency. A person who has an immunodeficiency of any kind is said to be immunocompromised. An immunocompromised person may be particularly vulnerable to opportunistic infections, in addition to normal infections that could affect everyone.

2 days ago I had a blood draw (unusually UNpainful! GOOD!)...but within 8 hours, the site of the "stick" - inside r. elbow - had become infected! Tiny open sore, inflamed, angry, red, about dime-sized, tiny discharge, no fever though, no red streaks...but painful.
Immediately treated w/Bacitracin. Today the area of redness is receding a bit, still a tiny open sore - but not gone yet. (Tech was good, no bruising as I often get, wore gloves etc.)

I've NEVER had this type of reaction before. Any quesses as to what this might mean? Any connection to AV use? I do bruise VERY easily now (BIG, dark bruises - sometimes I can't even identify the causes).

My understanding (aided by Wikipedia):Neuro-immune - the immune system and those components of the nervous system that modulate immune response. In practice, the neuroimmune system also includes hormonal signals and cytokines that participate in signalling between the immune and nervous systems.

Auto-immune Disease - Autoimmune diseases arise from an overactive immune response of the body against substances and tissues normally present in the body. In other words, the body actually attacks its own cells.

Immunodeficiency - Immunodeficiency (or immune deficiency) is a state in which the immune system's ability to fight infectious disease is compromised or entirely absent. Most cases of immunodeficiency are acquired ("secondary") but some people are born with defects in the immune system, or primary immunodeficiency. A person who has an immunodeficiency of any kind is said to be immunocompromised. An immunocompromised person may be particularly vulnerable to opportunistic infections, in addition to normal infections that could affect everyone.
We are all devoting a lot of precious energy to helping each other. That really is cool.

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I don't think of ME/CFS as being an autoimmune disease, but there certainly seem to be autoimmune responses in some of us, maybe many? Hashimoto's thyroiditis is autoimmune and seems to be fairly common in CFS cases. And it sounds like there are other autoimmune responses as well. XAND is an abbreviation for XMRV Associated Neuroimmune Disorder as compared to AIDS which is Acquired Immune Deficiency Syndrome.

Thanks for this Shane. It helps to see these all defined in the same spot at the same time!

I don't think of ME/CFS as being an autoimmune disease, but there certainly seem to be autoimmune responses in some of us, maybe many? Hashimoto's thyroiditis is autoimmune and seems to be fairly common in CFS cases. And it sounds like there are other autoimmune responses as well. XAND is an abbreviation for XMRV Associated Neuroimmune Disorder as compared to AIDS which is Acquired Immune Deficiency Syndrome.

Thanks for this Shane. It helps to see these all defined in the same spot at the same time!

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Gracenote,

My experience is consistent with your assessment. The neuroimmune issues for me are now paramount (as are my autonomic neural issues). My endocrine issues (neuroimmunity), which are directly associated with the pituitart/hypothalamus have had dramatic impacts the HPA axis and in turn appear to have amplified my immune deficiency problems (three days in the hospital with septic shock this past summer).

Things on the neuroimmune spectrum went one step further when my I stopped producing vasopressin and developed Diabetes Insipidus (a very clear marker of mid-brain dysfunction).

The neuroimmune problems may be the result of all the viral co-infections which creates a downward spiral: Immune deficiency allows viral infections which causes neural damage - some of which impacts the neuroimmune system. Neuralimmune issues further suppress normal immunity and then it's time to hang on!